Melody's Story

Happy 3rd Birthday Melody!!! Part 1

It is with much awe and gratitude in our hearts to the Lord that we are pleased to announce Little Miss Melody is three years old! Melody has most certainly come a LONG WAY since she was born.

Melody’s health is better than it has ever been. Thanks to Sandra Coulson, Melody has experienced extraordinary improvements in her most significant vulnerability, her breathing. Although we have to monitor Melody closely, it appears that for now she does not need a C-PAP (provides positive pressure to support breathing while sleeping) unless she has congestion from sickness. This is remarkable, given how severe her apnea was! Melody’s oxygen levels are good. When she is awake, believe it or not, her levels are about 98!

When Melody was first born, she needed to be able to drink 44 cc’s (a little over an ounce) of milk in order to come home from the hospital. That was a big job for little Melody! It seemed like she would never be able to achieve that. She did it! One doctor cautioned us that when her needs increase beyond an ounce, she would very likely be back for a feeding tube. Melody didn’t get that memo! Now she can easily drink 10 to 15 ounces at one meal. Melody eats solid food (mashed up) about four times a day. She gets excellent nutrition, and her favorite meal is red lentil soup. She frequently eats an entire avocado at mealtime, and truly that is just her appetizer. The girl can eat!

In November we had to switch Melody to a forward facing car seat because her legs were too long for the rear facing seat. That may not seem like a big deal, but she has come a long way. When she came home from the hospital (on day 20), she was so little and fragile she needed a car BED. She could not even be put in an infant car seat with a newborn insert.

Melody’s health was extraordinarily delicate when she first came home from the hospital. At that time Melody’s grandparents gave us a pink diaper bag for her. We weren’t sure if we would ever use it. Our pastor’s wife Roxy planned a baby shower to be held after church one Sunday shortly after Melody came home from the hospital. Melody was too fragile that day. So Roxy graciously re-scheduled it. Melody was still not doing well on the re-scheduled day. Roxy tried yet a 3rd time. The thought that Melody’s diaper bag would never be used was so sad to me. Finally, the day came when the baby shower was held, and Melody was able to attend with diaper bag in tow. Well, we haven’t just used it once as we anticipated would be the case. I am happy to announce it is quite well worn at this point!

Melody has grown so much since she was born! In this picture you can see one of her first little outfits. We cannot exactly say that she has the tall genes that some of our children have. However, according to the Trisomy 18 growth chart, she is close to the 95th percentile in height. Compared to non-Trisomy 18 children, she is actually “on the charts” for height.

As for her weight… that is not exactly Melody’s strong suit, but a girl can’t be an overachiever in everything. For a bit of perspective, she is a little more than quadruple her birth weight. On the Trisomy 18 growth chart she is in the 50th percentile for weight. That is quite an achievement for Melody since she gained all her weight eating by mouth, not feeding tube.

We took Melody to see an outstanding eye doctor, Dr. Kruger, who has an amazing ability to assess visual capacities, even with a child like Melody. Her assessment was that Melody’s vision is likely one of her strengths! When she told us that information she was officially elevated to Melody’s “good news doctor” status. (That is a pretty exclusive position, by the way. 😀) We are thankful she can see well. I suppose we shouldn’t be too surprised, given how much she loves her books!

Melody responded to music in the womb. She responded to music the day after she was born, when she had previously been unresponsive. Now Melody doesn’t just respond to music, she likes to participate. She gets excited when we sing at church and she “sings” along with us. One time my friend asked me after the service, “Did you notice that she was singing in rhythm?” We love hearing her sweet little voice.

When Melody was younger she used to cross her eyes a lot. For the most part, that is no longer the case. From the time Melody was born she has had significant sensitivity to sunlight. We are grateful for Melody’s eye doctor who has helped her substantially with this issue through light therapy. Melody used to bend her hands at her wrists. Although there is still some weakness there, she doesn’t really do that any more! (She waves her hands when she is excited, but she doesn’t droop them in the way she did previously.) Nan, her cranial sacral practitioner, is the one who helped remedy that one. For a while she had quite a bit of tummy distress. That appears to be gone! That is thanks to Dr. Scott’s (chiropractor) insight.

Melody’s facial features have changed. She used to have very little definition in her chin. Thanks to the amazing work of Sandra Coulson, who helped Melody strengthen her mouth muscles, she now has a cute little defined chin. It compliments well her delicate doll-like facial features.

For the first 21 months of Melody’s life she was sick quite frequently, and this was not without its stress, to put it mildly (i.e. her life hanging in the balance). Twice she was hospitalized for sickness. Just over a year ago (in November) Melody came home from the hospital with a C-PAP. That was a contributing factor to her being sick less often, since she was finally getting the oxygen and support she needed. Since then she has acquired the strength to breathe well without the C-PAP. (Thank you, Sandra!!!) In addition to Melody getting the oxygen she needs, we found some wonderful resources for helping her immune system. Both of those factors have resulted in her being sick much less frequently. The picture here is from when Melody was sick in November of 2014. After that, she went until September of the following year with only one minor cold!

We are ever so grateful for the wisdom the Lord has given us in navigating through Melody’s ups and downs!

See Part 2 of this post for the remarkable developmental progress the birthday girl has made recently.

“If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him.” James 1:5

Comments 6

To our dear sweet Melody,
To watch you grow and progress is one of our greatest joys. We rejoice with each of your accomplishments and brag and brag to all of our friends whenever you learn to do something new. We also love to brag and brag about the wonderful care you receive from your 3 wonderful sisters and your adorable big brother. What a joy is has been to see God work His miracles in your life. We love you, dear one, and can hardly wait to help you celebrate your 3rd birthday.

What a total blessing you are Melody – your courage, spunk and beauty speak volumes about Gods love and majestic glory to His people. What a treasure you contain. We are so very proud of you and your hard work to fulfill your destiny. What an honor to walk with you on your journey.

Happy Birthday Melody
Thank you for sharing your pictures
I so happy your doing well
I thought of your family a lot during the holidays and I k ow you all had a blessed Christmas
Have a wonderful New Year
Linda Dorough Berendt

We can verify her lovely singing accompianment at church. 😉 I love that last photo with her cute little nose. Both Em & Else had noses like that when they were babies, too. Her siblings get credit, too, for all the hours of love, attention and effort (I bet they have each floor tile at church MEMORIZED by now from walking back & forth w/her stroller). 🙂 Great job!!
:), Jackie & Mersch Family